Here are some suggested organisations that offer expert advice on SN.
So we have a 3 year old son with autism and read that we may be able to get help with an extension through a disabled facilities grant. We contact the council (Middlesbrough) and get passed around being erroneously told that such grants are only for physically disabled children! Eventually an Occupational Therapist comes out to visit us. As soon as she walks through the front door she tells us we will NOT get an extension or a grant. We smile politely in an attempt to keep her on-side. Our son was having a meltdown when she arrived and she looked at him with contempt making various comments about how difficult 'they' were. She goes through the motions of an assessment and asks us aggressively 'who told you that autustic children were eligible as I've had another one trying to get a grant and I want to know if there is someone advising you'! She asks all about our other kids and is HORRIFIED when I tell her I co-sleep with my baby and feed her throughout the night. She asks whether we know about other grants such as the Family Fund which we tell her we have already applied to for driving lessons and he tells us we will NOT get them as they don't give grants for them anymore (we have just received confirmation that we have been successful!). The assessment continues in the same vein and she says we won't get a grant but she can give us a step to help out son get in an out of the bath!! When we discuss any issues we have with our son she dismisses them saying her grandsons can be naughty too! She tells us she had attended a talk given by a gentleman with aspergers so she is practically an autism expert! When I point out that our son is nonverbal with classic autism so very different she says that the gentleman she heard speak was a mouthpiece for ALL autistic people! Eventually she leaves (miraculously not in a body bag!).
We speak to her today and she informs us again that we will NOT get a grant and that she has referred us as a social care issue because I breastfeed during the night I must be sleep deprived and therefore can't look after the children properly!!!!! Her daughter doesn't breastfeed her granddaughter during the night so I shouldn't be either!!! So in trying to get a little help we have been left feeling we are terrible parents. I promise you there are NO other issues i have not mentioned, we are in NO way incapable of looking after our children. This OT is mad! We are going to make a formal complaint but I just wanted to vent!
Does anyone have any experience of getting a DFG for an extension for a child with autism?
i have no experience to help you but just wanted to express my at the OT.
A friend of mine had her garden fenced and made safe for her daughter who has ASD under a DFG.
I'm waiting for an OT to come and do an assessment on our garden as the fencing is not secure and neighbours have a pond!!
Hope we don't get your OT or she will end up IN the pond!!!!
We got a fence at front & an indoor handrail at our stairs from comm OT.
I have heard about people getting grants for extensions, though don't actually know anyone.
But your OT was such a complete bastard that I would put in a complaint about her. Seriously. She is saying that services are resource led, and not needs led. Maybe you should start to correspond by email so you have a record of what she is saying.
Not in the pond, but UNDER the patio.
I am almost speechless.
Complain as it was outrageous to say what she did.
That is so totally out of order on so many fronts you must complain.
Don't complain yet. Wait for this woman to write up and send her biased, discriminatory and ill-informed report. Your written clarification back to her, with cc to social services and health visitor will (in sharp contrast) be entirely fair, evidence-based, and up-to-date. Then await events.
If SW and HV react to her as the loose cannon she seems to be, they will back you to request reassessment by one of her colleagues. This is safer than getting a reassessment via a formal complaint, as a bad manager will maintain staff's bad decisions as a point of principle.
If the SW and HV are unhelpful or powerless to help with reassessments, its time for a major complaint whilst recruit high-up pro-breastfeeding types at UNICEF, the PCT, hospital and council.
Middlesborough's historically dismal BF rates are a major priority for these bodies, and they will be scared of losing their imminent, highly coveted baby-friendly, see page 17 status
Thanks for the advice and link mariammma. Ironically the local breastfeeding support group run by the HVs had asked if I would be an advocate/support person as I have breastfed my other children for between 18months-2years.
Definitely go for the advocacy... Fun, networking and (usually) free crèche and cake while training
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